Preprint Article Version 1 This version is not peer-reviewed

The Salt without the Girl: Negotiating Embodied Identity as an Agender Person with Cystic Fibrosis

Version 1 : Received: 23 January 2019 / Approved: 24 January 2019 / Online: 24 January 2019 (11:42:42 CET)

A peer-reviewed article of this Preprint also exists.

Nowakowski, A.C. The Salt without the Girl: Negotiating Embodied Identity as an Agender Person with Cystic Fibrosis. Soc. Sci. 2019, 8, 78. Nowakowski, A.C. The Salt without the Girl: Negotiating Embodied Identity as an Agender Person with Cystic Fibrosis. Soc. Sci. 2019, 8, 78.

Journal reference: Soc. Sci. 2019, 8, 78
DOI: 10.3390/socsci8030078

Abstract

In this manuscript, I build and expand on prior work by myself (Author 2016) and others exploring the dynamics of embodiment among people with chronic health conditions. Specifically, I critically investigate the intersecting social and medical elements of responses to bodies perceived as too thin and otherwise lacking in physical ability, using my own experiences of living and aging with cystic fibrosis (CF) as a case example. In these explorations, I center gendered identity and its intersection with disabling physical illness. I do so by using my own lived experiences as autoethnographic anchor points to guide critical review of key concepts from the nexus of these two content areas. I focus throughout on exploring how others’ reactions to a frail-looking body often constitute a form of forced gendering via the narratives people attempt to construct for why a person’s body appears that way. The title of the manuscript supports this framework by referencing three cornerstones of patient experience in the CF community: the general trend of patients having salty skin due to the pathology of the disease, a prior embodiment project called Salty Girls (Pettigrew 2012) that engages this idea, and the more abstract concept of “saltiness” in describing the grit marginalized people display in responding to microaggressions.

Subject Areas

gender; nonbinary; cystic fibrosis; embodiment; agender identities; identity negotiation

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